The Plan

When I was about 8 years old, I remember going into the woods behind my house and digging in a giant dirt mound. I imagined that orangey, clay like mound was an archeological dig site (it was actually dirt from a retention pond they made for a new subdivision) and I was on the verge of discovering something of great scientific significance. I thought to myself, "Wouldn't it be cool to be an archeologist and help rediscover the past?" I'm not really sure why that particular occupation was the front runner for an eight year old, but I'm pretty sure it had something to do with the giant stacks of National Geographic magazines my Dad had in our living room. Secretly that became my "plan."

I'm still doing photography,
just less of it than I did before.

Well, my "plan" changed and by the time I was about 14 years old I told my Grandmother that I wanted to become a photographer. My inner self wanted to travel the world, with no attachments, have wild adventures, and capture the world through my own point of view. The ultimate "plan" at that time was being published in National Geographic magazine. My Grandmother's reply to my chosen occupation, "Well, that doesn't sound to stable and they don't make much money." She grew up during the Great Depression and stability was everything to her. So, I nodded my head in agreement and said, "Maybe I'll become a physical therapist." (I liked helping people) My Grandmother smiled and thought that sounded like a great "plan." Truth be told...I HATE science!

Fast forward a few more years (past high school) and life has now gotten in the way, my "plan" of becoming a photographer was almost completely squashed for many reasons (one being a very unsupportive photography teacher that only showed interest in jocks and pretty girls), and I found myself running on the hamster wheel. My "wants" and insecurities overpowered my "plan." So, I caved, enrolled myself in college for a business degree and believed I was destined to become another corporate lackey. My "plan" changed once again. I HATED business! (primarily because of all the math)

Skip ahead two more years and I changed my "plan" again. Now I was diligently working towards a degree in History (kinda close to archeology...sorta). I worked, studied, read A LOT, wrote A LOT MORE, and managed to complete my BA in History with a minor in English Literature. I thought I'd get my Masters and teach at the junior college level someday. Education doesn't pay and I had bills...LOTS of bills. During all this time, I was on again and off again employed. I chalk it up to my restlessness because nothing I was doing was what my heart and soul were telling me to do. So, I made another adjustment to my "plan."

The proud college graduate!

Before I finished my degree (by the time I was 27), I was married, we were looking at buying our first home, and trying to conceive Rae. When the pregnancy test showed positive we had to work on a new "plan." I would return to work sometime after Rae was born. She would be enrolled in a good daycare and everything would be perfect. We'd build a garage for my husband's '53 Ford and I'd get a small studio space in our attached garage to work on my projects (I have never entirely given up the photography "plan"). The "plan" was perfect. We could do this!

Eighteen months after the birth of our daughter and I can honestly say, "We have NO plan!" Every day we are working towards the next day. Not a year from now. Not six months from now. Not even one month from now. We planned our life around the idea that there wouldn't be any major kinks in the "plan." Well, we had a kink...Rae has special needs. So, my "plan" has changed once again...it's a blank slate.

I still have a sketchy idea of a "plan" and it is usually prefaced with many "if's." IF Rae doesn't walk. IF Rae has to have a wheel chair. IF she has another seizure. IF the doctors can actually diagnosis her. IF we can find some assistance. IF...IF...IF...IF

What I can definitely "plan" for are more days like today... Taking a break to spend the afternoon with my best friend Olivia (Rae's honorary Aunt) & her son Oliver (Rae's boyfriend). Watching as Rae takes her first swim of the year and with gentle splashes in the water (a newly developed pleasure). Smiling as the water hits her cheeks and laughing at her own silliness. She had a great afternoon swimming, playing with Lily the cat (see video), eating Cheetos (yup, you read that right), and watching Dinosaur Train. I also "plan" to enjoy the present and try my hardest not to worry about the next kink in our "plan" that may or may not change our course.

"The best laid plans of mice and men often go astray."

Robert Burns

Sun Beams: More Little Victories

We have a couple of exciting developments to share...

Two weeks ago, while reading Goodnight Moon to Rae, I noticed that she started helping me turn the pages, which is a great improvement over trying to eat the pages. I couldn't wait to show her PT.

Then this past week, while my Franklin and his, then girlfriend, Rae (now fiance, Yippie!) were visiting she taught our Rae how to "high-five." This nearly brought me to tears because it's the first hand gesture that she's done and it's been consistent (four days in a row and counting).

I still tear up thinking about those precious "high-fives" and how long I've waited to see her use her hands. We're so grateful for these little victories because they keep us focused on all the progress Rae has made and the progress we know will come in time.

Sun Beams: Little Victories

I've noticed that many of my postings tend to feel a little heavy and focus on the burdens and stresses that weigh on my weary mind. I don't want that to become the primary voice of this blog and would like to take the time to celebrate our Little Victories.

1. On December 19th, while waiting for a transaction to be completed at Verizon, we noticed that Rae held and drank an entire 8 ounce bottle...by HERSELF! That is quite the accomplishment considering we have been working with her for over three months just to get her to drink from a bottle much less hold it on her own. We were thrilled! I even took a picture so I could remember the moment. Yup, I'm one of those Mom's. *Say cheese!*
2. In the last two weeks we have noticed an increase in her rolling over . Of course she isn't always thrilled when she rolls over, but she'll figure out she can roll back over eventually. I never knew rolling over was such an important building block of child development (until Rae didn't do it) and we hope it will soon lead to army crawling...maybe...I'm keeping my fingers crossed.
3. Rae is back to sitting unsupported for longer than a minute! We actually reached just over a minute and a half during her therapy session this week!!  We were up to almost three minutes before Thanksgiving then she grew. Every time she has some growth spurt or feels under the weather she regresses a little. It's like playing chutes and ladders and we keep landing on the dang chute...Whee!
4. She now has 16 teeth and is not afraid to use them! While I know this isn't a gross motor-skill milestone I am glad she has a mouth full of choppers. From the time she was 6 months till she was about 10 months it was the only thing I could really point to as a big "yippie" in our home. Other parents cooed over crawling, cruising, and walking...we had teeth. Beautiful, straight, white teeth.
5. When being held, Rae has started holding onto the shirt of whoever is toting her around. Doesn't sound like much until you've carried 20 pounds of rag doll around for more than five minutes. She's becoming quite heavy and that tiny bit of assistance is more than welcomed.
6. Her find motor skills are progressing nicely as we now have battles over picking the puzzle pieces out of her foam floor mat. I'll come into the living room and the frog no longer has eyes or the helicopter is missing its rotor blades. I swear I'm going to flip it upside down and duct tape it together.
7. She is using her arms and hands as a form of expression/communication more often. Waving them around when she's happy, tapping them on her high chair tray when she wants "more," and every once in awhile she will sorta wave. The best one so far happened while I was singing "Little Bunny Foo-Foo" and she started bouncing her arm up and down along with mine. It was a wonderful moment for me and it hasn't happened since, but that one time was just what I needed.
8. Rae has some sensory issues, for lack of better wording, and for whatever reason soft, furry toys that talk really upset her. For her birthday she received a shake and giggle Elmo from her Aunt & Uncle and (much to my relief) she LOVE's it! Prior to this bright red, giggling, muppet she would pull her arms back, scrunch up her face, whimper, tears gathering in the corner of her blue eyes, and shake in fear of anything furry that made noise. Her fear of talking stuffed animals has been overridden by her love of Elmo. Ahhhh...the power of Elmo! (la-la-lala...)

Some of these Little Victories are spread out over a month or more and that is just part of living in a Hypotonic World. Everything is done at Rae's pace and only she seems to know what speed that pace is set and when we may arrive to our next milestone. We are all just along for the ride, supporting her development, celebrating our Little Victories, and doing the best we can to not let the frustrations overshadow the joys of this journey.